June 2016
Newsletter

Dear Friends,

We have generally relied on the quantity of morphine going out of the Government Opium and Alkaloid Works (GOAW) as the index of access to pain relief in India. Practically, the whole amount is utilised in India and though, this is not the perfect way of assessing consumption, it is still a reasonably reliable index.

We are very glad to report to you that the trend is clearly positive. The first time in the last quarter century, the consumption of morphine in the country went up above 300kg. In fact, it was 329kg in 2015.

We thank Mr A. K. Saxena of GOAW for providing the statistics and all at Department of Revenue of Government of India for the support.

Reacting to our blog, Shri Romesh Bhattacharji, former Narcotics Commissioner of India tweeted that though it has reached an all-time high of the last quarter of a century, it is still way below the pre-NDPS Act, 1984 level of 411 Kg! Sobering thought!

Well, better days are coming, we are sure! (Wish they would come a bit faster, though.)

“Female and male nurses hurried about pushing and shoving the inert body, robbing any peace, contemplation or prayer. Where was palliative care? When she did leave, not a single doctor or nurse came by; only a new one appeared to issue the death certificate. Where was compassionate care?” asks Parthawarathi Shome, the celebrated economist, about his mother’s treatment at the end of her life.

For the patient in pain who does not tolerate morphine very well (a proportion of patients may not, for genetic or other reasons), we have had no other opioid pain killer available for oral use in India. In most of the countries, they switch from one opioid to another when one is not well tolerated. But in India, if you cannot tolerate morphine, well, tough luck. Of course, 99% of Indians have been putting up with even lack of access to morphine; so who bothers about the minority who can get morphine but do not tolerate it?

Finally there is a ray of sunshine. The efforts of a lot of people seem to have paid off. Access to methadone has been approved by the government of India by the gazette notification in May 2015. Now we understand that the Drug Controller General of India has approved methadone tablets and syrup for sale for pain relief.

A word of caution to all palliative care people in India: Most of us are not familiar with the medicine. Methadone needs to be understood; then it will help us.

“Kerala has more palliative care centres than the rest of the country put together and its extensive programme is bolstered by thousands of volunteers who give up their time to tend to those who are incurably ill, bedridden or nearing the end of their lives.”

Kerala can be proud. But not complacent. We are doing well only in comparison. Most of our hospitals do not have pain relief or palliative care programs even now.

That elderly woman in the picture is luckier than most others in her situation in India, but what little we give her is only a tiny bit of what she needs desperately!

“Americans are increasingly addicted to opioids. Meanwhile people in poor countries die in agony without them”, says this recent article in The Economist that explores how ‘tighter prescribing’ to prevent abuse has caused unintended harm elsewhere.

“The International Narcotics Control Board (INCB), an independent monitor that oversees the implementation of UN drug conventions, estimates that 92% of all morphine, an opioid commonly used to control the pain caused by cancer, is consumed in America, Canada, New Zealand, Australia, and parts of western Europe—which between them hold only 17% of the world’s population.”

“A report in 2009 by Human Rights Watch found that of some 300 Indian medical colleges, only five taught palliative care. The consequence is that few doctors know how to prescribe opioids safely. Even for patients with advanced cancer, they avoid morphine.”

“Home has not been the same after my father’s death last year. But Kuttikoottam gives me absolute fun, a temporary respite from my sorrows,” says Abhirami. It is for the second time that 14-year-old Abhirami is participating in Kuttikoottam, a three-day summer camp organised by the Pallium India trust that began on Thursday.

As in previous years, about 70 school students got together for a summer camp organised by Pallium India. The common bond between them: they are all from families struggling with life-limiting diseases. Without support for education, they might well have been forced to drop out of school.

Kudos to the volunteers who conceived this program and brought it to fruition.

We provide financial assistance and career guidance to our patients’ children who may have to drop out of school because of disease or death in the family. We support their education all through to college and beyond – till they can earn for the family. On an average we support 250-300 children every year.

The new academic year begins soon. Of the ₹1.5million that we need this year, we must find ₹150,000 (US $2300) by 15 June. Please help.

To donate, please visit: http://palliumindia.org/donate/. Kindly add a comment during the online transfer or write to us (info@palliumindia.org) after the donation is made, so that we can make sure it is used for this purpose.

Stephen Connor of WHPCA and Katherine Pettus of IAHPC led advocacy for palliative care in dementia at the World Health Assembly, on 28 May, 2016, when the WHA resolution progress report was discussed.

“Dementia care at the end of life is increasingly being studied as the different courses of patient deterioration warrant dementia-specific palliative care strategies and treatment decisions more frequently need to consider co-morbid disease.”

The unknown is scary. If you know what you are going through, you can deal with it.

Dianne Gray, chair of Elisabeth Kübler-Ross Foundation, shares with us Livestrong Foundation’s document that teaches youth how to understand and deal with grief. Don’t miss this; it will help you some day.

“How can you do this work, day in and day out?” This is a question that palliative care workers hear all the time. Honestly, we are often surprised at the question. We cannot see how we can do anything else; it is so enriching. People blossom near the end of their lives and give themselves to us, and we change for the better.

The Journal of Pain and Palliative care Pharmacotherapy is an indexed journal that has made the narratives free access. The journal welcomes your Narratives on Pain, Suffering and Relief. Tell your story to the world and help improve palliative care awareness. If you have a story to narrate, share it with us. Write to info@palliumindia.org

“In India, there is a fight-to-the-death mentality about treating the terminally ill,” writes Dr Jean Jacob in an article titled “Last Resort: India is a bad country to die in” published in The Caravan dated 1 May 2016. “Doctors treating a patient who is past the point of being able to make her own decisions are bound to obey the wishes of her relatives, who typically opt to use all possible means to prolong her life, no matter how artificial that life might be.”

Dr Jacob writes about an 83-year old man with terminal lung cancer who was brought to the Intensive Care Unit of his hospital where he was on duty as an intensivist. After receiving a battery of treatments aimed at prolonging his life, his vital organs began to fail, and their functions were compensated with drugs and invasive tubes. “Confined to a cold bed, isolated from his family and friends, and at the mercy of strangers in white coats, he had a mental breakdown. He raved about how the nurses were trying to kill him, and demanded that he be set free.”

Dr Jacob continues: “To address the situation here, India will need legal reform, and a concerted shift in the medical system to provide greater access to end-of-life care outside hospitals. Such care, if properly planned, can be provided effectively and affordably in patients’ homes, through community-based approaches. There are numerous good examples of such systems across the world, but perhaps the best one for India to consider already exists on its soil.”

World Hospice and Palliative Care Day is a unified day of action to celebrate and support hospice and palliative care around the world. It takes place on the second Saturday in October each year. This year, World Hospice and Palliative Care Day will take place on Saturday 8 October. The theme of World Hospice and Palliative Care Day 2016 is: ‘Living and dying in pain: It doesn’t have to happen’. Continue reading->

The “International Update on Pain Management and Palliative Care Advances 2016“, organized by the Pain and Palliative Care Unit, Shri Guru Ram Rai Institute of Medical and Health Sciences and the Indian Medical Association, Dehradun will take place on 25 & 26 June 2016. The theme of the update is “Palliative Care-Everyone’s business” and “Pain Relief-A Fundamental Human right”. Venue: SGRR Institute of Medical and Health Sciences, Patel Nagar, Dehradun 248001, Uttarakhand.

On June 25th, a workshop aimed at explaining in detail the NDPS Rules, its amendment, procedure to obtain Recognized Medical Institution (RMI) status for procuring and dispensing opioids etc. will be conducted, followed by a day long conference on 26th June 2016. For more details, visit: http://www.sgrrmc.com/iuppca2016/

Are you interested in knowing more about palliative care and its relevance in today’s society? Would you like to volunteer for the cause? Can you work with an existing palliative care centre in your area and help improve access to pain relief for the needy? Or, work with a hospital and start a palliative care centre? Can you arrange awareness programs in your area? There is something for everyone to do. Every little action helps. You need not be a medical professional. All you need is a willing heart.

If this resonates with you, then this training is for you. Pallium India organizes two-day trainings on palliative care at Trivandrum once in two months. The upcoming training is on June 17-18 at Arumana Hospital, Perunthanni, Trivandrum.

We welcome international visitors at Pallium India and appreciate the support from our colleagues around the world. We request that you contact us at least 2 weeks prior to your visit so that we can make the necessary arrangements. Sorry; we would discourage “drop-ins” for fear of the impact on patient care.

We have observership programs for interested professionals and students, collaborative visits, and long term placements. Click here for more information. Contact: visitors@palliumindia.org

There are some moments in life that define you. They stop you in your tracks, rudely shake you awake from your comfortable existence and push you to reconsider your life choices. They go on to guide your every decision and become an intrinsic part of your character.

M R Rajagopal experienced one such moment at quite a young age. He was studying medicine when his neighbour was diagnosed with cancer. “He lived about 100 metres away,” recalls 68 year-old Dr Rajagopal, “All night I could hear him screaming in pain. The family asked me if I could help because I was a medical student, but I was in my first year and did not know much.”

When I was first introduced to palliative care as a medical student, it struck me as a rather mysterious medical specialty. Remarkable in its acceptance of death and dying, when all the rest of us were battling to save lives, almost as an end in itself. Doctors always out to ‘cheat death’, regardless of means and sometimes wilfully disregarding the suffering incurred along the way. Palliative care practitioners in stark contrast appeared to me to be amazingly resilient, with depths of compassion and a unique medical perspective. I still think that.

Now, though, after a twenty year career in emergency medicine and later public health, I don’t see palliative care through that mysterious lens anymore.

Many ill people with a legitimate need for drugs like oxycodone and other narcotics known as opioid analgesics cannot get them and are suffering and dying in pain, according to health officials, doctors and patients’ rights advocates.

In Russia, India and Mexico, many doctors are reluctant to prescribe these painkillers, fearful of possible prosecution or other legal problems, even if they believe the prescriptions are justified.

At a recent six-week certificate course in palliative care, held at Pallium India in Trivandrum, we asked course participants to read and discuss the article: ‘Hospice – Where Peace and Turmoil Coexist’ by Dr Vidya Viswanath.

In this article, the author introduces to us to a young mother of two with metastatic nasopharyngeal cancer, living with severe pain and the indignity of tracheostomy and nasogastric tubes in place. Unable to speak, when she was brought to the hospice, she wrote: “I do not want to live like this” on a pad for her doctor to read.

Modern medicine has advanced a lot — which is indeed a boon to humanity. Even a limb severed in an accident can now be stitched back by doctors under certain conditions using modern techniques. One who suffers a heart attack can lead a normal life with the help of a bypass surgery or angioplasty. A stroke victim can be saved if he or she is rushed to a good hospital within the golden hour. But at the same time, there is a very different aspect of modern medical practice that is seen to be manifesting itself increasingly.

When I started life as a palliative care social worker just over 26 years ago (although the term “palliative care” hadn’t been invented then) I was based in a multi-professional team that supported people with terminal cancer and their families in the community. I was employed by the north London borough in which we worked. The first day I arrived at work the team administrator said to me: “This is a good borough to work in; you can get anything you need for patients here.” Well she was right (within reason) but oh how times have changed.

Several years ago I started researching the nearly insurmountable barriers people with advanced cancer face in accessing opioid painkillers in Armenia. I interviewed many people who were dying — in horrible pain. These were devastating interviews, seared in my memory. I had to be careful not to disclose an interviewee’s diagnosis – oncologists in Armenia do not normally discuss the diagnosis and prognosis with their cancer patients because they lack training on how to guide patients after the initial difficult conversation.

In many cases, these patients didn’t know they were dying. But others did.

Palliative care should be provided by family doctors, specialists and many other health care professionals who are already treating people for disease. This includes basic symptom management, emotional and mental health support and the ability to discuss advance care planning and goals of care.

Disclaimer: Information provided by Pallium India has been collected from different sources and though every effort has been made to ensure that it is up-to-date, its accuracy cannot be assured. Pallium India shall have no liability for any damages, loss, injury, or liability whatsoever suffered as a result of reliance on the information provided.